Qatar Biobank team outlines what genomic data is, and why it needs to be protected
The human genome is perhaps the single most vital and powerful piece of information about a human being. It reveals sensitive information about their past, present, and future – such as important clues to diseases.
And if hacked, as Ameena Al Emadi, IT Manager at Qatar Biobank, part of Qatar Foundation, explains: “The data can be used to identify the vulnerabilities of a nation, for example, and viruses can be produced to attack that country.”
In simple terms, a genome is the complete set of a living being's DNA. A single human genome contains more than three billion DNA base pairs and takes up to 100 gigabytes of storage space. With the advancement of precision medicine and genomic research expanding, more and more genomes are being sequenced, with storage space eventually expected to run into exabytes – the equivalent of one billion bytes.
It is imperative to the protect and store these massive amounts of genomic data. Re-identification, kin privacy breach, theft of legal and forensic DNA are just some of the known risks of genomic data leakage. And while protecting genomic data is crucial, a question remains: when it comes to sharing this data for drug development by pharmaceutical companies or for research in effectively administering precision medicine, where is the line drawn?
It is not just privacy that is often the top priority for such data; the ownership of this data also remains a critical aspect of genomic research. However, if this data is withheld, it could mean scientists will be unable to tackle chronic diseases, especially those that are prevalent in the region.
Qatar is a small country, and if you find a variant or a genetic disease and you identify the individual, you will be able to identify the family of this person directly
“There are different examples of data collection and governance of data,” says Dr. Nahla Afifi, Director of Qatar Biobank, an entity that is making vital health research possible through collecting samples and lifestyle information from swathes of Qatar’s population.
“If you look at the Scandinavian model, they have a very well-established database that includes information from the time a person is born until their death. It's a slightly open access model without many constraints.”
However, Dr. Afifi adds that the governance of data also depends on the culture and laws of specific countries. With the implementation of the General Data Protection Regulation in Europe, data needs to be confidential, and therefore the process is more restrictive. It means one cannot transfer data outside their country.
“As long as it's anonymized data, we can share it,” Dr. Afifi says. “But it's very important, especially in Qatar, that individual data is not shared. Qatar is a small country, and if you find a variant or a genetic disease and you identify the individual, you will be able to identify the family of this person directly. I find this as a challenge here, and so we have to be careful in how we share our data.”
We consider genomics data as highly sensitive data that is stored in a sealed environment, and no external or unauthorized users can get access to it
At Qatar Biobank, Al Emadi says: “We consider genomics data as highly sensitive data that is stored in a sealed environment, and no external or unauthorized users can get access to it, not even for research, unless it comes through a proper request channel.”
An individual’s genomic signature is considered to be as important as their blood type – it helps in determining decisions in clinical treatment and care. A breach in genomic data is thought to be worse than the leak of credit card information – an old credit card can be canceled, but genomes cannot.
All our systems are built in-house, and all our data is stored in locally hosted systems
Data acquired by Qatar Biobank, which has so far collected 363, 076 samples from 25,934 participants, is kept within the borders of Qatar – meaning it cannot be hosted outside of the country – and is kept in a secure environment so that it does not become exposed to the internet and become vulnerable to hackers.
“All our systems are built in-house, and all our data is stored in locally hosted systems,” Al Emadi says. “Genomic sequencing for our samples is done at Sidra Medicine, where the DNA samples are also stored. This is a huge infrastructure which Qatar Foundation invested to build.”
As a large-scale medical research initiative which collects data and biological samples from the local population, Qatar Biobank is working to develop customized medical solutions to the various diseases and health issues prevalent in the country.
And through such efforts, Qatar Biobank will make it possible for scientists to conduct research to address some of the greatest health challenges facing Qatar and the region, including cardiovascular disease, obesity, diabetes, and cancer. Qatar’s investment in research, development and innovation reflects its aspirations to help revive the Arab world’s tradition of scientific discovery and innovative thinking – and shape a healthier nation and a healthier world.